It's still not a banana

But it probably is Meniere’s disease. Which isn’t really a disease, any more than the reactive airway disease I have is a disease. (I don't have asthma, pinky promise.)

Way back in 2014, I got my ears thoroughly checked out by both an ENT and an audiologist. I had some mild low frequency hearing loss, also fullness in the ears but I hadn’t yet had any vertigo or much tinnitus. I mean, let’s face it—as I’ve said elsewhere, I was a military musician for years and you cannot perform the 1812 Overture with real howitzers and not have some tinnitus. But it wasn’t bad, not yet anyway.

About a year later, I was back with the same issues: very full ears that actually aren’t full but sure feel that way, very mild tinnitus and increased lower frequency hearing loss. At that same visit, my ENT uncovered some pretty severe sinus infection issues I’d had for years; I ended up having sinus surgery which helped so much. And I also ended up with a hearing aid—I posted then that I gasped when I heard in stereo again, it had been so long.

But less than a year later my hearing resolved, which I did not expect. That’s when Meniere’s was first suggested and I pushed back hard. I felt like that was a BS diagnosis, and that people who are diagnosed with that tend to get slotted into the crazy, crackpot, difficult patient. No thanks.

I don’t remember exactly when I had the episodes of vertigo (probably because I don’t want to remember) but they were brutal. The world tilted and rotated; I couldn’t walk but had to crawl to the bathroom to puke my guts out for a couple of hours. That happened oh maybe three or four times and then vanished. (Yes, another Meniere’s symptom which I didn’t want to acknowledge.)

In the last six months, my hearing in my left ear has deteriorated a lot, the pressure in both ears is immense and the tinnitus in my left ear is more like standing right next to a Boing 767 engine roaring along on an international flight. It’s loud and it hurts. 

Then this last Saturday, I had an absolutely brutal episode of vertigo, complete with throwing up for several hours. I still feel the vertigo lingering at the edges but God willing, I’m not at the fall down and need to puke stage.

But that got me off my butt and I called my audiologist again, who said oh hey you have to see the ENT first. But he’s just going to send me to you! Yes, but you have to go to him first. And in a nice piece of luck, he had a cancelation the very next morning, which was yesterday. 

And yes, my hearing has deteriorated again. My audiologist reprogrammed my hearing aid for me on the spot, so now I’m hearing in stereo again. The ENT was great, did a really thorough review of my records with him and discussed everything in detail. Since I’m now presenting with all four symptoms, it’s pretty much a certainty that this is Meniere’s. He suggested considering a brain MRI since it’s been a few years (how sad is that that I’ve had more than one?) but doesn’t expect that will show anything. I don’t either but I agreed to get one because I also said I didn’t have melanoma, argued with my orthopedist that my pelvis was not fractured and didn’t really believe my oncologist that I had breast cancer.

So. Clearly I had better rely on my medical partners rather than my own opinion.

Here's my results from 2015 (dots show from 2014, the lines were from that day's test):

And from yesterday (dots are from 2018, the lines are from yesterday):

The right ear (which is weirdly on the left) now shows some typical high frequency hearing loss which generally happens to us all. It's the reverse slope hearing loss in the left ear that's the stumper.

The MRI is scheduled for January 28 so more to come. 

Do you hear what I hear?

I thought you might be interested in what it’s been like with my new bionic part. I got it not quite three weeks ago (posted about it here); I went in a week later for adjustments. I asked for the highs to be dropped a bit and the lows boosted, which my audiologist did—then off to work I went.

Yeouch. It was too much, and sounded wrong so I called him a couple of hours later and asked if there were any way I could get in the next day because I knew I couldn’t last two weeks until the next appointment. He squeezed me in, and we agreed to reset all the levels to what he’d originally programmed. He said that it can take a while for the brain to relearn how to process the information coming in that ear.

Today was the second adjustment visit. I told him I wasn’t sure if my brain had adjusted or if I was having problems because this is peak (PEAK) allergy season for me, which means my ears are clogged, or what. But I couldn’t hear as well. This time he didn’t change the low to high frequency program, but instead boosted it all just slightly.

Right now this seems to be working well. I’m going to be in meetings off and on this week so I’ll have more chances to hear in different circumstances. I haven’t yet turned the volume up (I have three levels of volume control), so I may give that a try too. Overall, though, I’m encouraged and I know it’s helping.

When you hear hoofbeats

I’ve always had a hard time accepting that (a) anything was ever wrong with me and (b) if something was wrong, that it might be unusual.

For example:

• I waited three weeks to go to the doctor when I was 19 and had all the symptoms of acute appendicitis. Three weeks! And because of the way my appendix presented itself (small colon and attached length-wise—which I also had a hard time believing), my intestine was compromised and I had a nasogastric (NG) tube. But I didn’t realize that either until a few years ago when a friend of mine, who’s a med/surgical nurse, told me that. And when my surgeon told me that if I’d have waited another day to come in to be seen, I would have died. Didn’t believe him. 
• Same thing with the incisional hernia I developed after six major abdominal surgeries. How on earth could the ongoing pain I had be a hernia? But of course it was and once it was repaired, bam—the pain went away. 
• Same thing with my ears. When the audiologist got nearly giddy last year because I had such a rare hearing loss, I thought surely he was wrong. But of course he wasn’t and my results this year confirmed that diagnosis. Now I’m sitting here in my office typing this post wearing my new hearing aid. And I can hear. 

In fact, when I was in the audiologist’s office and he was doing his thing and finally turned on the hearing aid, I gasped and teared up because I could hear in stereo. I didn’t even realize I’d lost that.

Low frequency hearing loss isn't well known and not well researched or addressed; there are just so few of us who have it. So I'll need to go in frequently over the next month so he can evaluate how the hearing aid is working for me and what, if any, changes need to be made to the programming. And yes, he’s still giddy about me and my hearing situation. I think he might write a white paper about me because my situation is that rare.

Sometimes it’s a zebra.

PSA: Those jokes aren’t funny

Why do people make stupid so-called jokes about others’ issues or health problems or conditions?

I mentioned last year that I have what’s called reverse slope hearing loss. That’s a fancy way of saying that instead of the typical high frequency hearing loss—which is associated with age and/or environmental factors and which I fully expected to have given that I served in the US Army and was also a professional musician for years—the loss occurs in the low frequency range.

I encountered a lot of those stupid not-funny jokes last year when I told people about this problem.  The most common comment was “What?” followed by a har har har. Yeah, you aren’t as funny or unique as you think you are.

The second most common response was “Wow, getting old sucks, huh?” Um—I just told you it’s not age related or caused by environmental damage. Maybe I’m not the one with the hearing problem?

Only a few said anything at all comforting.

I’ve just returned from a visit to my ENT and as I suspected but hoped I was wrong, my low frequency hearing loss has gotten worse. Since we ruled out any physical cause last year with an MRI, and since I don’t have typical symptoms of Meniere’s Disease, my doctor isn’t sure what’s causing the loss. But my left ear is definitely worse.

In fact, it’s bad enough that I need to start telling people—at least the ones I can’t hear—and I’m already dreading the stupid inane comments. I’m also looking into getting a hearing aid in hopes that I can get some hearing restored to that ear. While hearing aids are expensive as all get out and not covered by insurance in either Kansas (where I live) or Missouri (where I work), I’ll pay the money if I can hear again.

In the meantime, if your first urge is to say “what?” to me, don’t. Don’t be an ass. Be kind and if I ask you to repeat yourself, just know it’s a hell of a lot more frustrating to be on this side of my hearing loss than it is to be on your side. 

Well it's not a banana

I had a very thorough hearing test today, and then saw the specialist. I knew something was up because I could tell during the hearing test that my right ear was just fine, clogged yes but working as intended. Not so with the left ear, and then I got to do some tests I’ve never had done before – things that measured the pressure in my ears, checked to see how well my ear drums vibrate, and then how well the nerves in my ears work to conduct the sound (that one involved vibration on my skull, which felt incredibly weird). The audiologist was almost happy running all his tests because as it turns out, I have a fairly rare kind of hearing loss: low frequency hearing loss or nerve related hearing loss.

Since I got home, I’ve been scouring the internet for more information, and here’s what I’ve found:

• This article talks about severe reverse slope hearing loss – mine isn’t severe, but it’s most definitely reverse slope and as I read the author’s description about what he can and can’t hear, I just kept nodding. I hear some sounds remarkably well; they are all in the higher frequencies. Others get lost in the audio clutter for me. This helps me understand why I didn’t really hear the ambulance that nearly t-boned me the other day. It had one of those newer, lower sounding sirens. If it had been high and wailing, chances are good I’d have heard it.
• This article has charts that show the various kinds of hearing losses as they look on an audiogram (figure 6 is spot on for mine).
• My doctor told me there are generally three causes for this kind of hearing loss: Meniere’s disorder, a small benign tumor that presses on the nerve, and we don’t know. He’s leaning toward we don’t know for me since I have no other symptoms to support a diagnosis of Meniere’s. We could run tests to see about the tumor but if there is one, treatment options aren’t great and don’t have a good chance of improving things. Plus these kinds of tumors are very small and very slow and not life threatening. 
• I can hear women’s voices better than men’s and children’s voices are also better for me. 
• Typically those with my kind of hearing loss will struggle in crowded places with loud, ringing acoustics (think bars, airports, places like that).
• Generally, people with this kind of hearing loss don’t have issues with their speech – they talk just fine. Speech gets affected when the loss is in the upper frequencies. 
• And I found this section from another article to be really interesting – I may have lost this hearing a while ago and just not realized it:

"A low frequency hearing loss is not easy to identify because it tends to not have any symptoms. In fact, lower frequency sounds do not have as much information as sounds in the higher frequencies. Plus, people with hearing in the middle and high frequencies can use what they hear in those frequencies to make up for what they do not hear in the lower frequencies, thereby "masking" the hearing loss. One of the few clues to a low frequency hearing loss is that the person has difficulty hearing in groups or in a noisy place."

My hearing loss is fairly mild so far, so there’s nothing to be done except get checked periodically. I go back in six months to see how I’m doing.